Patient Advocacy and Peer Support for Stroke Survivors

Stroke-Survivors.org is a fledgling organisation that is determined to promote and expand the use of peer to peer support among stroke survivors. We seek not to duplicate or compete with existing initiatives but to complement them.

We also seek to advocate strongly with health and care providers that their support and promotion of peer to peer support is a vital future strategy which benefits patients, their families and carers, but also the health providers themselves.

Effective peer to peer support should over a period of time produce better outcomes for patients dealing with the varied but usually significant effects of strokes. Better outcomes can be measured in many different ways and stroke-survivors.org aims to assist academics and researchers in qualifying and where possible quantifying those benefits.

In addition, peer to peer support must form part of a wider patient (and survivor) advocacy programme.

As a stroke survivor, I (the author of this piece) see that patients and their support groups need to have greater ownership of their own recoveries. I say that from an entirely pragmatic perspective (i) recognising that regardless of who your health care provider is, resources will always be finite. In a world in which it is likely that strokes will become an even greater call on existing resources, it makes sense to mitigate against that future demand.

Importantly, for the stroke-survivor themselves, it is equally important to have greater ownership - in fact, agency. Speaking personally, one of the biggest (non physical) impacts of strokes is the loss of self-worth or value as a result of the changed circumstances forced by the stroke or strokes.

Being involved in peer to peer support, and patient advocacy as you will see below can reverse that impact, bring new purpose and perhaps most importantly add huge value through the lived experience of being a stroke survivor.

Introduction: Navigating the Post-Stroke Landscape

Patient advocacy in the UK is a vital mechanism designed to empower individuals, safeguard their well-being, and ensure they receive appropriate, compassionate care within the often-complex healthcare system.1 This involves actively standing up for patients, survivors, and their caregivers, guaranteeing access to necessary support and resources.2 Stroke presents a significant public health challenge across the UK, standing as the leading cause of disability and the fourth largest cause of death.3 Annually, around 100,000 people experience a stroke, contributing to a current survivor population of 1.3 million, with over half experiencing lasting disability.3 Hospital admissions for stroke have notably increased by 28% since 2004, a trend partly attributed to an aging population and lifestyle factors.4 Projections indicate that by 2035, the number of stroke survivors in the UK could reach 2.1 million.5 In this challenging landscape, peer-to-peer support emerges as a profoundly impactful form of patient advocacy, offering a unique pathway to empowerment and recovery by connecting individuals through their shared experiences.6

The profound physical, cognitive, and emotional changes that can follow a stroke often compromise a survivor's ability to effectively navigate the healthcare system and articulate their own needs. This inherent vulnerability creates a critical gap in self-advocacy. Therefore, patient advocacy is not merely an optional addition to care but a fundamental necessity for stroke survivors to ensure their rights are upheld, their specific needs are met, and their recovery trajectory is optimized. Peer support, by its very nature of empowering individuals through shared understanding and collective problem-solving, directly addresses this crucial need.

The Multifaceted Challenges of Stroke Recovery

Stroke recovery extends far beyond addressing physical impairments, encompassing profound emotional, psychological, and social challenges that can be as debilitating as the physical effects.8 Many survivors grapple with a complex array of emotions, including shock, denial, anger, grief, and guilt, often stemming from the perceived loss of their pre-stroke life.8 Common psychological impacts include depression, affecting at least one-third of survivors within the first year, anxiety, frustration, and emotionalism—difficulty controlling emotions, which impacts 20% within six months.8 These feelings are frequently linked to a loss of independence and confidence.8

Furthermore, stroke can lead to significant social isolation. Communication difficulties, such as aphasia, or a reluctance to engage in social activities due to physical limitations or perceived differences, can severely restrict a survivor's social connections.8 This isolation often exacerbates emotional distress. Many stroke survivors also report unmet clinical needs, particularly concerning memory deficits, speech impairment, and ongoing physical support.11 While physical rehabilitation is typically the immediate focus post-stroke, unaddressed emotional and social challenges can significantly impede overall recovery, leading to a diminished quality of life and potentially increased reliance on formal services. For instance, depression can severely impact a survivor's motivation to engage in vital rehabilitation therapies. This situation highlights that the healthcare system, traditionally geared towards acute physical recovery, may not fully address these often-overlooked burdens. Holistic recovery, therefore, necessitates not only clinical intervention but also robust psychological and social scaffolding, which is precisely where peer support demonstrates its profound value.

Peer Support: A Cornerstone of Empowerment and Recovery

Peer support serves as a powerful form of patient advocacy by empowering survivors to actively participate in their own health management and well-being.7 It fosters connections among individuals who share similar experiences, creating a safe, encouraging, and inspiring environment for recovery.6

The benefits of peer support are multifaceted:

Emotional Validation and Reduced Isolation: Peers offer a unique depth of understanding that healthcare professionals or even family members may not fully replicate.11 This shared perspective leads to feelings of being understood, normalizes their experiences, and significantly reduces feelings of loneliness, isolation, and fear.11
Improved Mental Health Outcomes: Peer support has been shown to improve participation and reduce distress, depression, and anxiety among stroke survivors.6 It can enhance self-esteem and mitigate mood disorders.13
Practical Advice and Problem-Solving: Drawing on their lived experience, peers provide practical information and problem-solving strategies in accessible language, covering aspects such as managing energy levels or developing coping mechanisms for daily challenges.11
Enhanced Self-Efficacy and Confidence: Connecting with others who have successfully navigated similar post-stroke challenges significantly boosts a survivor's confidence and self-efficacy.6 This encouragement helps survivors set and achieve personal recovery goals.15
Community Reintegration and Quality of Life: Peer support programs play a crucial role in facilitating community reintegration, improving social participation, and ultimately enhancing the overall quality of life for stroke survivors.6

Peer support is not a substitute for clinical care but a vital complement. It offers a distinct type of relationship that provides generalization of experience and social validation, fostering feelings of empowerment.12 By increasing individuals' confidence in self-management, peer support can also alleviate pressure on the broader health and care system, as individuals who lack such confidence are statistically more frequent users of services.7 This dynamic positions peer support as a crucial "soft" infrastructure that enhances the resilience and efficiency of the healthcare system, particularly in the long-term management of chronic conditions. Investing in and formalizing peer support networks can be a cost-effective strategy for the NHS to achieve its long-term objectives, contributing to cost savings across health and social care.7

UK Landscape: Networks of Hope and Advocacy in Action

Aside from the initial activities of stroke-survivors.org, established UK based charitable organizations are already promoting peer support networks for stroke survivors. The Stroke Association, for example, offers a Stroke Recovery Service that provides tailored support plans, including direct representation and advocacy, alongside peer and social support.16 Their support services include professional counseling and peer support sessions facilitated by trained volunteers.9 The charity also provides online communities, weekly volunteer calls, and local support groups.18 A significant poll revealed that one in five stroke survivors considered conversations with other survivors to be the single most important aspect of their recovery.21

Different Strokes, specializes in supporting younger stroke survivors (those under 65) and their families.22 This charity is run by stroke survivors for stroke survivors, offering an information line, a network of exercise and support groups (many coordinated by survivors themselves), and an active Facebook group for sharing experiences.14 Different Strokes emphasizes that its community members are "the experts in stroke recovery and rehabilitation with first-hand knowledge".22

Former professional footballer Nick Clarke runs an established peer to peer support group through his registered charity Stroke Information. Nick has a very hands on approach which demonstrates his care, and a wider willingness of many stroke survivors to assist in the recovery of fellow survivors, their families and friends.

Other health and patient related bodies outside of the UK, such as the global alliance, Global Heart Hub are increasingly strong advocates of patient advocacy and peer to peer support.

Peer support is delivered in various flexible formats to ensure accessibility, including formal and informal group settings, one-to-one interactions (in-person, online, or via telephone), and vibrant online communities.6 This adaptability caters to diverse needs and preferences. Furthermore, these efforts align with national policy. The NHS Long Term Plan aims to increase the availability and quality of rehabilitation services through partnerships with organizations like the Stroke Association.25 Similarly, NICE guidelines for stroke rehabilitation underscore the importance of person-centred care and early supported discharge, areas where peer support plays a significant role.26

The direct provision of peer support services by these charities grants them unique insights into the lived experiences, unmet needs, and ongoing challenges faced by stroke survivors. This ground-level understanding then informs and strengthens their broader systemic advocacy efforts, which include campaigning for improved stroke care and influencing national policies, such as the 10 Year Health Plan or General Election manifestos.5 The credibility derived from direct patient engagement makes their policy recommendations particularly impactful.

These charities and others do not merely fill service gaps; they act as crucial bridges between the real-world experiences of stroke survivors and the strategic planning of the NHS and government. This dual role makes them powerful advocates, ensuring that policy and service development are genuinely patient-centred and responsive to actual needs, thereby driving continuous improvement in stroke care across the UK.

Conclusion: Empowering Recovery, Together

Patient advocacy, particularly through peer-to-peer support, is not merely a supplementary service but a fundamental component of holistic stroke recovery in the UK. It directly addresses the profound emotional, psychological, and social impacts that often persist long after acute medical intervention. By fostering connections and shared understanding, peer support empowers survivors to navigate their recovery journeys with enhanced confidence, resilience, and a renewed sense of purpose. It transforms individual struggles into a collective strength that propels recovery forward. Continued investment in and promotion of these vital peer support networks are essential to ensure that every stroke survivor in the UK has access to this transformative form of advocacy, enabling them to live their fullest possible lives after stroke.

Equally, investment in, and support for survivor advocacy and peer to peer support is a cost effective and forward thinking strategy, producing better outcomes in the short term and potentially reducing service demands in the future.

Works cited

nursesgroup.co.uk, accessed July 3, 2025, https://nursesgroup.co.uk/patient-advocate-uk#:~:text=Basically%2C%20patient%20advocacy%20wants%20to,of%20their%20rules%20and%20values.
What is Patient Advocacy? - Skills for Patient Advocate - UK - Nurses Group, accessed July 3, 2025, https://nursesgroup.co.uk/patient-advocate-uk
World Stroke Day - House of Commons Library, accessed July 3, 2025, https://commonslibrary.parliament.uk/research-briefings/cdp-2023-0204/
Hospital admissions for strokes rise by 28% since 2004 – as NHS urges the public to 'Act FAST' - NHS England, accessed July 3, 2025, https://www.england.nhs.uk/2024/11/hospital-admissions-for-strokes-rise-by-28-since-2004-as-nhs-urges-the-public-to-act-fast/
Our Strategy - Stroke Association, accessed July 3, 2025, https://www.stroke.org.uk/corporate-strategy.pdf
Experiences of adults with stroke attending a peer-led peer-support group | Brain Impairment | Cambridge Core, accessed July 3, 2025, https://www.cambridge.org/core/journals/brain-impairment/article/experiences-of-adults-with-stroke-attending-a-peerled-peersupport-group/F98B6F1650EE4F8B9450C7D114E7509E
Supported self-management: peer support guide - NHS England, accessed July 3, 2025, https://www.england.nhs.uk/long-read/peer-support/
Emotional changes | Stroke Association, accessed July 3, 2025, https://www.stroke.org.uk/stroke/effects/emotional
Emotional Support | Stroke Association, accessed July 3, 2025, https://www.stroke.org.uk/professionals/life-after-stroke-services/emotional-support
Emotional change and how you might feel after stroke, accessed July 3, 2025, https://www.newcastle-hospitals.nhs.uk/services/stroke-unit/life-after-stroke/emotional-changes-after-stroke/
Stroke survivor's views on group self-management interventions - University of Liverpool, accessed July 3, 2025, https://www.liverpool.ac.uk/~kmb/MyPublishedPapers/Clark%20et%20al%202016.pdf
Peer support for stroke survivors: a case study - PMC - PubMed Central, accessed July 3, 2025, https://pmc.ncbi.nlm.nih.gov/articles/PMC4070336/
Effects of peer support interventions on physical and psychosocial outcomes among stroke survivors: A systematic review and meta-analysis | Request PDF - ResearchGate, accessed July 3, 2025, https://www.researchgate.net/publication/352369035_Effects_of_peer_support_interventions_on_physical_and_psychosocial_outcomes_among_stroke_survivors_A_systematic_review_and_meta-analysis
Help for Stroke Survivors UK | Stroke Support Groups, accessed July 3, 2025, https://differentstrokes.co.uk/what-we-do/find-a-support-group/
Recovering from a stroke - NHS, accessed July 3, 2025, https://www.nhs.uk/conditions/stroke/recovery/
Our Stroke Support services, accessed July 3, 2025, https://www.stroke.org.uk/life-after-stroke/our-stroke-support-services
Stroke Recovery Service, accessed July 3, 2025, https://www.stroke.org.uk/professionals/life-after-stroke-services/stroke-recovery-service
Support in your area - Stroke Association, accessed July 3, 2025, https://www.stroke.org.uk/stroke/support/services
Stroke support groups, accessed July 3, 2025, https://www.stroke.org.uk/finding-support/stroke-support-groups
Support and guidance overview - Stroke Association, accessed July 3, 2025, https://www.stroke.org.uk/stroke/support
The importance of peer support for stroke survivors - NHS Networks, accessed July 3, 2025, https://networks.nhs.uk/blog/the-importance-of-peer-support-for-stroke-survivors/
Different Strokes | For those affected by Stroke | YourCircle, accessed July 3, 2025, https://www.yourcircle.org.uk/Services/12481
Different Strokes - a leading UK charity helping younger Stroke Survivors, accessed July 3, 2025, https://differentstrokessouthampton.co.uk/
Work With Us - Different Strokes, accessed July 3, 2025, https://differentstrokes.co.uk/about-us/work-with-us/
Stroke - NHS Long Term Plan, accessed July 3, 2025, https://www.longtermplan.nhs.uk/areas-of-work/stroke/
Updated NICE Guidelines | Different Strokes, accessed July 3, 2025, https://differentstrokes.co.uk/updated-nice-guidelines/
Stroke rehabilitation in adults (update) - NICE, accessed July 3, 2025, https://www.nice.org.uk/guidance/ng236/documents/evidence-review-2

Campaigns | Stroke Association, accessed July 3, 2025, https://www.stroke.org.uk/get-involved/campaigns

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A deeper dive into who we are & what we want to achieve

OK, time to dive into a little more detail about what stroke-survivors.org is trying to achieve.

Firstly, in case you didn’t know (and I’ll keep it brief if you do) - my name is Paul Quinn and for want of a better term, I am the founder of stroke-survivors.org. Back in late July and early August of 2023 I had two ischemic strokes which occur when a blood clot or other blockage cuts off the blood supply to the brain, leading to tissue damage, and can cause all the massive damage many of you will be aware of either as stroke survivors yourselves, medical staff, carers or family members.

I’ve been incredibly lucky with my recovery, but the whole experience of recovery has led me to think about what can be done by survivors and their support groups to make their experience more beneficial to themselves and to others.

My mother was a nurse throughout her working life and my childhood, and my daughter is a resident doctor - formerly called junior, (although getting more senior with each passing day). Yet, I never realised the sheer effort, dedication and yes, love that medical staff, clinicians, therapists and others put into the care of those who need that care at the most vulnerable times of their lives. It is truly humbling (and even bewildering) to be on the receiving end of total strangers dedicating so much time, effort and love into your care.

However, we all know, regardless of where in the world you are, who your care provider is (publicly funded or private) that there comes a time when patients have to stand on their own two feet.

In the case of publicly funded health care such as the NHS in the UK, despite the politically motivated desire to offer as many services for as long as it takes, the harsh reality is that care is a finite resource for many, many patients.

That appears to be the case for stroke survivors and I say that with no criticism of those delivering the care.

So what can be done?

There’s a care deficit which occurs after the initial emergency care (which is by necessity focused on life saving and damage limitation) followed by the rehabilitation services which are vital to the degree of recovery most survivors will experience.

That care deficit provides an opportunity for individuals and collective organsiations be they charities, community groups, faith groups or any other interest group - the community organisations funded by football clubs (and many others) for example, Trade Unions or even neighbourhood watch groups to create a resource that can benefit members of their communities.

In the case of stroke-survivors.org I propose two related solutions, both based on the same premise.

With the limited knowledge I have of medical care, health care and follow on care, I’ve noticed the reference to patient advocacy.

What does that mean? It means providing patients with the opportunity to express their views, wishes, and concerns, and to protect their rights within the healthcare system.

It’s a very important and fundamental aspect of health care.

A step further

However, I’d go one step further - patients, survivors, family carers and other concerned parties - but particularly patients, must be allowed to have greater ownership of their recovery beyond whatever medical and technical intervention is required.

I say that not to challenge the providers of medical and health care, but to complement it, and ultimately enhance the ultimate objective of the most complete recovery by the patient.

The benefits of ownership and therefore “agency” are huge. Based on my own experience - the most damaging effect for me (and I appreciate others will have huge physical and cognitive effects greater than this) is post recovery, or even part through recovery, (as I am likely to be) is a feeling of loss of value and self worth.

Whatever you were, and however you define it, it’s likely that that role is diminished post-stroke - be it professional, work or business related, family related or even amongst friends. That’s even before we consider how we view ourselves.

Peer to peer support, and being involved in it, can add refreshed purpose, focus and ultimately meaningfulness to a life that through no fault of your own has been radically changed. This is true of all people regardless of your role prior to your stroke.

A possible solution - at least a contribution to better times ahead for the people you relate to and yourself

I fundamentally believe that by creating peer to peer support groups, we, as survivors, can add huge value to our own communities, and as a result add significant value to our own feelings of self worth. We can reduce our personal deficit and that of the community or communities around us.

The solution is simple, both at an individual and collective, community level.

It’s about creating peer to peer support groups using modern technology. In the first instance it’s using Whatsapp - but that in no way excludes any other platform or network - public or private.

That’s where stroke-survivors.org steps in.

We can provide access to existing groups of stroke survivors or at the organisational level provide knowledge and insight - including risk analysis as to how to best set up.

As a non-profit organisation we want to work with individuals, health professionals, care providers, health providers (public or privately funded) and very importantly individuals to achieve our objective - the best possible outcome collectively and individually post-stroke.

(Incidentally this concept works across all communities of different medically related groups of patients, survivors, families and carers - we believe the concept of peer to peer support, of greater agency and patient/survivor involvement and specifically post event ownership has immeasurable benefits - more to follow).

Please contact me at paul@stroke-survivors.org - I wish to engage with as many people as possible

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